Mastectomy is always in the news, it seems, and recent research focuses on women diagnosed with early stage breast cancer who opted to remove the affected breast as well as the supposedly healthy breast. The procedure is called contralateral prophylactic mastectomy, or CPM.
Peggy Orenstein addresses CPM in her widely read July 26 The New York Times Op-Ed piece titled “The Wrong Approach to Breast Cancer.” Orenstein says, “Researchers I’ve spoken with have called the spike [in CPM] an ‘epidemic’ and ‘alarming,’ driven by patients’ overestimation of their actual chances of contracting a second cancer.” She adds, “Well, first of all, it is extremely rare for a tumor on one side to spread to the other. Cancer doesn’t just leap from breast to breast. In any case, cancer confined to the breast is not deadly. The disease becomes lethal only if it metastasizes, spreading to the bones or other organs. Cutting off the healthy breast won’t prevent the original tumor from doing that.”
I have great respect for Orenstein, a two-time breast cancer survivor, and her Op-Ed piece is spot on — mostly. I do take issue with the title of the work because as we in Cancerland know, there’s no right way to do cancer, so how can there be a wrong approach? All we in Cancerland care about is saving our lives and making the best decisions we can with the Sword of Damocles hanging over our cluttered heads.
The road to prophylactic mastectomy is a difficult one, wrought with heavy decision-making. Most patients, I would think, do not just decide to lop off their breasts willy nilly. And I do not believe all women who opt for CPM are making the wrong decision. Unless one is faced with this devastating disease, he or she will never know how he/she will react.
I’m no medical expert, and all I can share is my point of view, and that is having a supposedly healthy breast removed should be the choice of the breast cancer patient.
Don’t get me wrong: I’m not promoting prophylactic mastectomy of any sort, but I do think it behooves us to listen to the patient and allow him or her to have the choice, if it’s a reasonable one. Those of us who hear the words “You have cancer,” are forever changed and want to save our lives. And, for some women, this means CPM.
Each woman’s or man’s breast cancer experience is like a fingerprint — unique to each person diagnosed. There are many complex factors to consider. My story, like everyone’s story, is unique. While I didn’t have CPM, I painstakingly decided to have a preventive mastectomy — on both supposedly healthy breasts — and years after my original breast cancer diagnosis to boot.
In 2001, I was diagnosed with cancer in my right breast. Understandably my world shattered. Forever.
I was a breast conservationist, as was my surgeon. He cited the studies that showed a lumpectomy with radiation was just as effective a treatment as a mastectomy in preventing a recurrence in the affected breast. Because I so desperately wanted to keep my breast, I opted for lumpectomy with radiation. When I told him my decision, he smiled. I knew he believed that saving my breast was the right choice.
And, at that time, it was.
However, lumpectomies can be overrated. In my case, the lumpectomy process was not so easy; after taking a sizable chunk out of my breast, the surgeon revealed that my margins were dirty, and he had to do a re-excision. This second lumpectomy caused an even greater deformity in my right breast. Although body-image issues began plaguing me, I decided to live with this deformed breast because, frankly, I didn’t want any more surgery.
I wanted peace.
Peace eluded me, however. The five years that followed were tumultuous — filled with scares and false alarms. My breasts were highly dense, and mammograms were not conclusive, so my oncologist ordered MRIs in addition to mammograms.
At the beginning of 2006, an MRI picked up an abnormality in the deformed breast. My staunch-breast-conservationist surgeon did yet another lumpectomy to remove the mass. Biopsy results revealed the mass was scar tissue from a previous lumpectomy. While I was relieved the results were benign, I was increasingly disconcerted and unhappy, living in constant fear of slipping through the cracks and getting an undetected recurrence in one or both of my breasts, thanks to my dense breast tissue.
Come to think of it, I was also upset by my now-mutilated breast.
Yet, if it weren’t for the breast density issue and the fear of a missed recurrence that gnawed at me, I still would have kept that breast. That’s how badly I did not want a mastectomy. But during the Scare of 2006, a radiologist told me, “Your breasts are so dense, it’s really hard to know what’s going on in there.”
I realized then, that, for me, keeping both breasts was akin to playing Russian Roulette.
After much deliberation, I told my surgeon I wanted a prophylactic bilateral mastectomy with reconstruction. He got all paternalistic on me and expressed that my decision was flawed. He refused to perform the mastectomy. While he was a surgeon noted for his excellence, I wondered how many lumpectomies on me were needed before he viewed the lumpectomy merry-go-round as mutilation.
I shopped around for surgeons who would buy into my choice.
I advocated for myself like I’d never advocated before. While some surgeons felt I had a screw loose, others said my decision was “medically sound.” My oncologist supported my decision completely, telling me, “If you don’t get this surgery, your life will be a series of continued scares, or you might have a recurrence that goes unnoticed.”
To me, this was no quality of life at all.
On December 1, 2006, I underwent a prophylactic bilateral mastectomy with DIEP flap reconstruction. Ironically, my mastectomy surgeon was a breast cancer survivor who had had a mastectomy years before. A doctor and a patient, she understood me. She knew that, in my case, a preventive bilateral mastectomy was a reasonable decision.
My recovery from the DIEP flap was difficult, despite my excellent reconstructive surgeons. But I knew about the difficult recovery, as well as the multitude of risks, before the surgery. I believe I made the best, most-informed choice I could have for my situation. I did not make this decision lightly. Despite my long recovery and the mind games that still plague me, I know I made the right decision — for me.
And, yes, I know that I can still have a recurrence in either or both breasts and that a prophylactic bilateral mastectomy is not a cancer panacea. But I opted for this procedure, hoping it could tilt the odds a bit more in my favor. Another patient in my circumstances might have opted to keep his or her breasts. And that’s fine.
Prophylactic mastectomy should be a choice for cancer patients.
Oh, and about the “healthy” left breast that was removed — the one that had never had cancer in it — it turns out it was filled with precancerous cells. “You would’ve probably had cancer again,” my oncologist told me. “Having you get this procedure was absolutely the right thing to do.”
Of course, if I still get a recurrence, I’m not so sure I would feel I did the right thing. I am human, after all. I made the best decisions I could under serious circumstances.
Breast cancer patients have a lot of decision-making to do, as so much is at stake.
Several medical professionals acknowledge the difficult decisions involved with prophylactic mastectomy. The Journal of the National Cancer Institute article titled “Marginal Life Expectancy Benefit From Contralateral Prophylactic Mastectomy” states later in the article, almost as an afterthought, “‘Survival is only one potential benefit of a cancer risk-reduction strategy; effects on cancer-related anxiety, cosmesis, and self-image are also important in decision-making processes.’”
Dr. Elaine Shattner in her article titled “It’s Not Just About Survival: Why Some Breast Cancer Patients Opt For Surgery on Both Sides,” acknowledges “But the decision [to opt for the preventive procedure] isn’t straightforward, as some might suggest. Survival isn’t the only issue. Rather, it’s about the quality of life after breast cancer surgery.”
And I hope my decision will give me the best possible quality of life. That’s all those of us in Cancerland really want, isn’t it?
A must-read post on this topic: Protecting Women’s Agency: On Prophylactic Surgery for Non-BRCA+ Patients
Where do you stand on the CPM issue?
Did you opt for a lumpectomy with radiation or mastectomy?
Feel free to share your opinions and your stories. I would love to hear them.
Tags: breast cancer, breast cancer and body image, contralateral prophylactic mastectomy, lumpectomy, Peggy Orenstein, preventive mastectomy, prophylactic double mastectomy